Truth: It has been a little rough over here. And I know a lot of families are feeling it too. A little Monday motivation (ok and a lot of self-talk) coming at you…
You are a good parent.
Whether you choose to send your child to school, therapy, a neighborhood cohort, daycare or homeschool.
Or maybe that choice was made for you by state and county regulations.
There are no right or wrong answers right now. Only the path that’s best for your family.
You are enough.
Remember this as you head down this new, unknown road. As you prepare for the balancing act of your life and gear up to fight for continued support and services for your kids.
You are stronger than you know.
If you ever doubt this, look at your kids. Their strength, adaptability, and resilience and just how far they’ve come in their short time on this earth. Then get back in the ring.
On a recent trip, we asked him every day, several times, if he wanted to go swimming. He firmly, directly, and absolutely said, “No.”
So, someone would stay home with him while the others headed for the pool. I chalked it up to mood, sometimes you just don’t know with him. He can be over a favorite toy or hobby in the blink of an eye. I do not get nor expect an explanation.
After three days of this, we decided to take a picture of the pool. This was the same pool he had been to so many times before, so we figured this was worth a try. I had a feeling something was lost in our communication.
The next day, we showed him the photo and asked if he wanted to go swimming. He excitedly responded with “Yes!”
Back to the beginning, the first specialists we saw when Wilson’s speech development was delayed continually insisted that he needed more visuals in his life. All day long, he should have images to remind him things like how to wash his hands or use the bathroom, visual schedules to transition from one activity to another, food visuals, stop/go images for safety, etc.
This was hard to wrap my head around. He knew how to do all these things, and I knew he understood so many words even though he couldn’t say many. I thought they were just trying to put him in the “autism box” – assuming he needed these seemingly excessive visuals like many other children with autism. I stubbornly wanted him to understand me, my way. I so badly wanted the words coaxed out of him.
But they were right. Eventually our walls were covered with these images he quite simply needed for regulation. Stories on self-care, self-calming techniques, stop signs, daily routines, and schedules. We kept images in the diaper bag, on our keychains and cell phones. We’d scribble plans out on whiteboards and leave instructions with caregivers to do the same.
It didn’t matter if you were the World’s Most Terrible Artist, he listened to these images. He understood them. Especially when his anxiety was heightened and regulation down, this was the way we could earn his attention.
Fast forward, and today this sweet boy knows hundreds of new words and concepts. He continues to understand so much more than he can say. Words have a way of escaping him. He learns them, he knows them, and then he often cannot access them. This frustrates the hell right out of him. This is the downright unfair, heartbreaking part of his brain working in this way it has been designed.
We can tell him the plan 1,000 times. He’ll anxiously repeat it back to us, over an over, waiting for confirmation that he has it down correctly. If we SHOW him, he calms, accepts, and moves on. He might come back and quietly check the image or schedule again and then continues with what he was doing.
Now he is the one adorning our walls with visuals. He draws, cuts and glues paper, and carefully hangs his creations with blue tape. I think he knows he can say so much more this way, and we are listening.
Communication looks different for everyone, and it’s constantly evolving. Keep trying new approaches and circling back to old tactics, even the ones that didn’t work the first go-around. It is always worth a try.
“Because he was made that way. Just like you were made to be just the way you are.”
Oh, how I have dreaded this moment in the past. I have asked myself that very question a million times, only to come up with as many different answers. Like many things in our autism world, there is not one straight answer, leaving you with the same frustration and confusion you started with, and more questions.
What did I do wrong?
Did I take enough of those prenatal vitamins?
Maintain the right diet during pregnancy?
Was it his vaccination schedule?
What on earth is a refrigerator mother?
Or maybe this path was meant to be his long before he arrived here on this earth.
People will tell you that everything happens for a reason. I don’t know if autism was meant to be or not but the one thing I do know, is that these two were meant for one another.
She has messed with this regimented little boy in the best possible way since she arrived. And he has been fascinated since he laid eyes on her.
As they get older, their differences have become more apparent but so is how much they are learning from each other.
She is so proud of him for every new accomplishment, while also slowly registering that life really isn’t always fair. She knows which buttons to push to set him off, but will also be the first one to rush to sing to him when he needs comfort.
“Give a squeeze,
Nice and slow,
Take a deep breath…
…And let it go.”
When the fog of frustration clears, I see beautiful “reasons” all around. Wilson is a constant reminder to slow down and appreciate the simplest of things. He could study leaves for hours and lays down to examine ants slowly making their way across the driveway. He studies his reflection with such curiosity and wonderment, and he will study you the same if you let him in.
And is there a better sound than children laughing? Turns out, you do not need words for that.
I have stopped constantly wrestling with the paradox that is this world of autism, insisting it had to be one way or another. Difficult or easy, high or low, complicated or pure and simple. Perhaps it will be, and always has been, both.
Life can be everything. Together, these two are everything.
**Click on image below for a sweet video. That Dumbo was Wilson’s favorite thing in life for his first four years. He brought it everywhere. He loved to rub it’s nose on his forehead when he was tired or needed calming. He shared that feeling with his new sister and it was such a tender moment.
We heard this phrase often in those first months after Wilson’s autism diagnosis. We were trying to wrap our heads around this world of autism in which our son was living. It’s a fairly simple phrase, which was almost refreshing given the complexities of this disorder we wanted so badly to understand. We’ve since learned that for us, autism is in the moment. It’s unpredictable. Some days it is two steps forward, and one step back. It’s phases you cannot wait to get out of, and moments you want to freeze in time. It’s taking the long way. Routine and Repetition. Pure innocence. Unconditional love and loyalty. It’s falling down and getting back up.
Wilson is a typical boy who loves being tickled and chased. He’s into anything that involves jumping, bouncing and spinning. The faster the better. He loves music, building, blowing out birthday candles (it doesn’t matter whose birthday it is), and dressing like his daddy. He loves anything and everything to do with pirates, trains and keys.
What makes him so different? This is where the wonderful comes in…
He is absolutely enamored with his shadow and reflection. Sometimes his mind and senses are so overloaded that he quite simply needs to be wrapped up tightly in a hug.
He says, “You’re welcome!” whenever someone on the television says “thank you.”
Scripting (reciting lines from movies, books, songs etc.) was Wilson’s first major vehicle for speaking. He could recite scenes from his favorite cartoon and sing songs before he could say “mama”.
Eventually, Wilson learned to use some of those phrases to communicate in his day-to-day life. When he wants you to read him a story, he’ll hand you a book and say “Once upon a time…” Every time he finishes in the bathroom he’ll say “Fantastic! All done!” with his arms in the air.
Much of his speech started as echolalia (repeating what he hears, verbatim.) When I would say, “bye, Wilson” he would reply, “bye, Wilson.” Echolalia is a common way for toddlers to learn and practice language, however, children with autism can have echolalia much further into childhood. There were times it felt as though he would just repeat me forever.
While tucking Wilson into bed one night, I said “I love you” and he replied, “I love you, mommy.” Mommy. He added that all on his own. He wasn’t just repeating me anymore, he was beginning to express his own thoughts and responses.
That one single word fed my soul so much hope that night. It seems so simple, but for him, it was a remarkable step. I remember every single moment of that exchange, and it was nothing short of wonderful.
Wilson's Climb 